Assessing and Building Readiness

Assessing Resources

One of the reasons why collaborations and consortia are important is because resources are needed to develop Patient-Centered Core Impact Sets (PC-CIS). The work requires gathering people and data. Even if the data exist and simply must be assembled in some way and analyzed, costs are incurred in doing so. Partnerships help to unite groups that can bring various resources and skills to the table.

A detailed workplan will need to be created, which will help to formulate budgetary and funding needs. It is important to prepare a plan that considers work already completed (e.g., data that already exists that need to be analyzed) versus primary data that need to be collected to estimate the costs expected.

Areas to consider when developing a budget include:


Types of Activities

Patient group staff time (and others)

Project management

Event planning (virtual and in-person gatherings)

Secondary data collection

Primary data collection

Data analysis

Data assembly

Documentation of methods

Report preparation


Meeting and conference costs (virtual or in-person)

Zoom, WebEx, or similar tools for large, interactive virtual meetings

Meeting room space, travel costs for in-person meetings

Recording and transcription costs (virtual or in-person)

Food, drink, hotel, and other in-person meeting costs


Patient and expert partners

Research participants

Research expenses

Secondary data purchase costs

Primary data collection (e.g., consultants, academic partners)

The cost of publishing open-source publications

Other vendors


Graphic design

Health literacy


Assessing Readiness

Each organization that decides to initiate a PC-CIS will want to assess its readiness. For assistance in assessing readiness, there are tools and checklists developed by groups working on similar efforts. Examples of include:

  • Stakeholder Engagement in Research Studies Toolkit
  • Toolkit on Patient Partner Engagement in Research (HIPXChange TOPPER) Toolkit
  • Partnership and Infrastructure to Support Patient & Stakeholder Engagement: A Scan of PCORnet Practices
  • Patient-Focused Medicines Development’s (PFMD) Patient Engagement Management (PEM) Suite includes several resources including these How-To Guides

Budget Creation and Financing

For guidance in creating a budget and in determining compensation and support for various project partners, see:

  • De-identified Budget from a U.S. Food and Drug Administration (FDA) Patient-Focused Drug Development (PFDD) project
  • De-identified Budget from a Patient-Centered Outcomes Research Institute (PCORI) Engagement Award
  • The Improve Care Now sponsorship page reflects the wide array of potential funders for such work including individual donors, banks, foundations, and federal partners.
  • The National Health Council (NHC) Compensation Principles (for US compensation) and Fair-Market Value (FMV) calculator for compensating US patients and patient advocacy groups
  • PCORI Framework for Compensation
  • The PFMD’s Patient Engagement Remuneration and Fair Market Value tool for non-US compensation

Sources of Support

Clearly, most organizations will not have all the financial resources to undertake PC-CIS development. Patient organizations must find ways to leverage what they have inhouse in terms of staffing, data, and expertise. But they will also need to seek funds such as grants and in-kind support. A patient group can first begin by working with the partners they identify in the consortia to determine what each partner can bring to the table. To fill financial and resource gaps, the group can seek grants and in-kind support from organizations such as PCORI, life-science companies interested in the disease area, or local or national health foundations. Important to the consideration of any funding source is maintaining independence and clear boundaries.

Resources to help here include:

Training and Onboarding

For any multi-stakeholder endeavor, but particularly efforts that prioritize and depend upon the role of patients, training or onboarding is an incredibly valuable tool.  Such training can be valuable for familiarizing patients if they are not academically or experientially trained in research methodology, regulatory processes, or other concepts. Training is also key for clinicians, researchers, and other stakeholders who may not have had experiences partnering with patients in such efforts. A plethora of existing trainings is available depending on the context of your PC-CIS creation.  A sampling of such trainings includes:

  • PCORI Research Fundamentals Training
  • Multi-Method Patient-Engagement Approach: A Case Example from a PCORI-Funded Training Project
  • The Kaiser Foundation Patient Engagement Toolkit and Guidance for training and engaging patients in data analysis
  • HIPxChange Deeply Engaging Patients with a Mix & Match of Methods
  • Patient-Focused Medicines Development’s (PFMD) Patient Engagement Management Engagement Training

Arthritis Use Case

Arthritis Foundation, Assessing and Building Readiness